Ride For Life: Local football hero fights ALS

(June 7, 2004) — MARION — The walls of the living room are festooned with photos and memorabilia. Together, they form a mosaic that tells the story of Tom Cook’s life.

There’s the faded No. 80 jersey from his days as a star two-way player for two undefeated Caledonia-Mumford football teams. There’s the shiny, black motorcycle helmet, along with a poster of his favorite musician, Stevie Ray Vaughn. There’s a ceramic guardian angel surrounded by dozens of photographs of Tom clowning around with his three daughters and his scores of friends.

The pictures and knickknacks convey a vibrant life, a life in perpetual motion. As Tom gazes at them from the bed where he is held hostage by Lou Gehrig’s disease, tears stream down his cheeks.

”Geez,” says his wife, Mary Ellen, gently caressing his face with her hands. “You’re awfully emotional today.”

Tom smiles at her. Though the debilitating neuromuscular disease known as amyotrophic lateral sclerosis (ALS) has robbed him of his ability to talk and move his arms and legs, it hasn’t been able to eclipse the illuminating smile that has brightened so many lives.

”We are all fighters in this family,” says Mary Ellen, who six weeks ago was diagnosed with a form of muscular dystrophy.

”We refuse to give up. We refuse to feel sorry for ourselves. Tom’s only 47 and we really believe if we hold on, they will find a cure. That’s why we’ve kept his Harley in good condition. It’s out there in the garage, waiting for him to ride it again.”

Mary Ellen Cook finds strength in her spirituality. She believes everything happens for a reason; that God has a plan. And as hideous as this disease has been for the Cooks, she has been able to find a blessing in a curse.

”Tom and I had been separated for about four years before he was diagnosed with Lou Gehrig’s two years ago,” she says. “It brought him and me and our family back together again and made us closer than we’d ever been. It’s also shown Tom just how loved he is — not just by us, but by the hundreds of true friends he’s made in his life.”

Since his days growing up in Caledonia, Tom has always been a giving person. It’s no mystery where his charitable spirit originated. His parents were constantly helping out others, often taking in those who had fallen on hard times. The Cooks loved people and loved entertaining. Every Friday night after a Cal-Mum football game, they would play host to as many kids as they could fit into their house to watch highlights of their school’s victory on the 11 o’clock news.

One night was especially memorable. During his senior season in the fall of 1974, Tom caught a touchdown pass that helped change the momentum in a hard-fought victory against archrival Le Roy. It preserved Cal-Mum’s second straight undefeated season and couldn’t have happened to a better guy as far as his classmates were concerned.

”There were no high school cliques for Tom,” says Loree Harrington, who has known him since he was a toddler. “He was a friend to all.”

His circle of friends has only grown through the years. The guy known to his buddies as “Totsy” or “Tunes” was so popular that one summer he was asked to be the best man at seven different weddings.

”He always made people feel special and always took the time to get to know them,” says Melanie Parnell, a buddy of his since 1976. “If he was your friend, you could count on him night and day to help you.”

After earning his associate’s degree from Monroe Community College in 1977, Tom spent 25 years working as a recreation therapist — first at the Rochester Psychiatric Center and later at The Finger Lakes Developmental Center.

”No one was surprised when Totsy chose a career taking care of others,” Harrington says. “He spent his life both on and off the job helping people.”

And, now, Harrington and others touched by his kindness are rallying behind him and his family in their time of need. To defray medical expenses and help with things such as a therapeutic mattress and a specially equipped van, folks in Caledonia and beyond have been holding fund-raisers on the Cooks’ behalf. Longtime friends such as Harrington, Parnell and Jim Crelly have organized rock concerts, a 10-mile walk and a golf tournament in his honor. This year’s tournament will be held today at the Caledonia Country Club. Tom is expected to attend.

”The generosity of people has been overwhelming because of the awesome love they have for Totsy,” Parnell says. “When we ask people for donations, they never hesitate and ask how much do you need. It has touched me in a way I never thought possible.”

Tom has always been passionate about the outdoors. He often took his daughters — Ashley, Arley and Kelly — camping with him. He taught them to appreciate the beauty of nature.

The other day, Arley went to a nearby bluff where father and daughter used to spend time gathering rocks. She brought back stones of various shapes and colors and placed them on the windowsill for her father to enjoy.

”He’s always been a good dad,” 18-year-old Arley says, placing a pet rabbit on her father’s arm. “He was always doing things with us. Now, the roles are reversed and we are trying to do things for him.”

Friends constantly are stopping by their rural Wayne County home, 30 miles east of Rochester, to tell jokes and reminisce. Tom can communicate to yes-and-no questions by blinking his eyes. He also communicates with that welcoming smile of his. Occasionally, Mary Ellen will use an alphabet board to interpret what he wants. But, usually, she can get by without it.

”It’s almost like we can read each other’s minds,” she says.

On the front deck, outside the living room’s picture window, Mary Ellen and friends have arranged flower boxes featuring colorful mums and geraniums. They’ve also set up three bird feeders to attract hummingbirds, finches and blue jays. It offers a picturesque view of the outdoors he so loves.

”Certainly, Tom wishes he could be out riding his motorcycle, being one with nature,” she says. “But I think he’s come to grips with things. I think through this ordeal he’s come to realize that he has a very good life because he is loved by so many.”

As soon as Mary Ellen finishes her thought, Tom blinks in the affirmative and smiles. His eyes well and tears once more trickle down his cheeks.

No alphabet board is needed. No words need to be spoken. These clearly are tears of joy.